When you’re living with a rare disease or loving someone who does, mobility challenges can be both physically and emotionally demanding. Here are some bathroom hacks.

When you’re living with a rare disease or loving someone who does, mobility challenges can be both physically and emotionally demanding. Here are a few clever ways to use pool noodles.

When you’re living with a rare disease or loving someone who does, mobility challenges can be both physically and emotionally demanding. Here are some tips for dressing with easiness.

When you’re living with a rare disease or loving someone who does, mobility challenges can be both physically and emotionally demanding. Here are some ideas for making your home smarter.

When you’re living with a rare disease or loving someone who does, mobility challenges can be both physically and emotionally demanding. Here are some tips for getting creative in the kitchen.

Discover how patient education empowers individuals with rare diseases to better understand their diagnosis, make informed decisions, and actively participate in their treatment plans. Learn why clear, compassionate communication is key to improving outcomes in rare disease care.

If you are coming across high copays and struggling to afford your treatment plan, here are a few options that may help you reduce the costs of your medications.

When you live with a rare disease, the joyful experiences risks can bring are all the more valuable.

How physical activity impacts this rare condition—and why you need to know about it.

All about Congenital Myasthenic Syndromes at a glance

Get essential information about congenital myasthenic syndromes (CMS) and why clinical trials are a crucial element in the path towards better treatment for the condition.

Get the basics on needle anxiety, one of the top medical fears among children, and discover tips to manage it.

On World Oral Health Day (March 20), we’re taking a closer look at what your oral health can tell you about your well-being.

As we step into Rare Disease Month this February, it's an opportune time to celebrate resilience, foster connection, and empower ourselves within the rare disease community.

An expert on adolescent health shares tips for families navigating substance use concerns alongside rare disease.

It’s National Influenza Vaccination Week: find out why the flu vaccine should be a critical part of your winter to-do list.

Special diets can be a challenging but necessary part of rare disease treatment. Here, a leading dietician offers advice for supporting nutrition from birth through adulthood. 

Tips from Know Rare on what to do and what to say to be a supportive ally to a friend, family member, or other loved one who has been diagnosed with a rare disease.

Read about the ways doctors diagnose Autoimmune Hemolytic Anemia (AIHA) and some common symptoms.

We spoke with several teenagers and their parents about how they cope with different aspects of living with rare disease. Here are their best tips and advice.